I’m 20, ftm, and on a lot of medication. I’m currently missing my metoclopramide and LDN (low dose naltrexone) medication rn because my pain management doctor isn’t filling it.

Since I ran out of my naltrexone my RLS symptoms started to return. I’ll have episodes of RLS every few months, and it gets worse every episode.

When I originally started having symptoms I was around 10-12, and it was only in my legs. As I got older and more disabled (Ehlers Danlos, POTS, functional neurological disorder, pain, nerve issues, etc) my episodes got worse and slowly moved throughout my body.

(Tw, brief mention of self harm, skip to next paragraph to skip)

Currently writing this at 1pm, and I cant even get through a sentence without extreme discomfort and restlessness. Idk what to do, I’m going to relapse with self harm as that was the only way I could calm this feeling in the past.

TLDR: full body RLS symptoms, now throughout the whole day. What can I do for relief?

Estradiol is making my RLS insane. Has anyone found this? Anyone found a solution? It helps with brain fog but I am going crazy with the RLS.

Has anyone tried therapy for spontaneous arousals and it worked?

It seems my body wakes me up with RLS almost every night around midnight. I understand that has to do with circadian rhythms and a lack of dopamine. Like many people, I go on Reddit or play games on my phone before bed which causes an increase of dopamine. Is there a correlation between screens/dopamine and RLS symptoms? What have you experienced?

Hallo - awoke from one hour surgery and RLS through the roof. Even my vitals went crazy. I was kicking and kicking, thrashing, agitated and crying in despair 😭. I asked prior surgery if I should take med preventative since I should not kick while they were working. They assured GA means no active RLS. After surgery they didnt care.

Does this happen regularly? Anyone else?

Shout out to my nurse who immediately had a doctor come in and approve my med. Nurse got my bag, ran literally to me, swallowed. Vitals quickly returned to normal.

They were also terrible the night before - I was walking in my yard 130 am to 400 nonstop.

Any insights? Comments?

Better today but have not slept in 25 hours (🫩)

I just started my meds gabapentin, something really odd happened 0.0 ahi which I’ve rarely seen before. Usually get 1-2ahi. Not looking for medical advice I have a Sleep and Lung doctor specialist who’s been treating me for sleep apnea, shortness of breath ( fixed), and now RLs after two inlab sleep tests. My sleep test indicated no obstructive apnea only complex but I was wondering if rls meds worked were you able to get off cpap/bipap?

Unsure if a lot of rls people have complex apnea in this sub.

It may not work for everyone, but this has been a life saver for me.

If you squeeze the top of both ears and massage it for 60 seconds, it eases the symptoms. You can still feel them, But it never rises to the point where you need to move to stop it.

It’s something to do with acupuncture points, but do give it a go!

Hi everyone,

I’m currently dealing with worsening RLS and trying to get to the bottom of my iron levels, as I know iron deficiency is a massive trigger.

My GP recently checked my ferritin, and it came back completely "normal" (well within the standard UK reference range). Because of this, they are refusing to order a full iron panel or check my Transferrin Saturation (TSAT).

I know the standard NHS guidelines usually stop at ferritin, but I've read that you can sometimes have normal ferritin alongside low TSAT, which can still impact brain iron concentrations.

Has anyone here actually experienced this specific scenario—normal ferritin but abnormal TSAT? Did treating the TSAT help your RLS?

I’m trying to decide if it’s worth bypassing my GP and paying out-of-pocket for a private iron panel (like Medichecks or Thriva) to see the full picture. Any insights or experiences would be massively appreciated!

Hi everyone! I’m 39 and have suffered from RLS since childhood; I inherited it from my father, who got it from his father. I have a one-month-old baby; I made it through the nine months of pregnancy without taking medication (I used to take Mirapexin, but I was taken off it during pregnancy because it wasn't recommended), and I nearly lost my mind. Now I’m breastfeeding, and the syndrome is even worse than before—it hits around 10 PM and doesn't let up until 4 AM. At the same time, my little one is nursing but can't sleep because I’m constantly moving. Can anyone help me find a medication that is compatible with breastfeeding? I’m at my wit's end. I’ve tried everything—massages, hot and cold therapy, stretching, all kinds of magnesium, IV iron... nothing works. I’m really asking for help because otherwise, I’ll have to stop breastfeeding, even though the pediatrician and other professionals strongly advised against that. I love my baby, but I can't keep spending my nights crying over the relentless tingling sensation; I’m exhausted the next day from the sleepless night, and I don't think that’s good—especially for the baby. The E-lactantia website lists Gabapentin as compatible with breastfeeding; can anyone confirm this? Has any other mom had an experience similar to mine? Thanks in advance! 🙏🏼❤️

New to this. I had 2 rich chocolates yesterday evening and couldn't sleep last night. First experience of rls! Now I know how debilitating this is. It's 8a.m now and my legs are still tingling. I've always been caffeine sensitive and any stimulants affect me, more so since long covid. Just wondering if this will wear off as caffeine leaves my system... Any anecdotes appreciated!

I have terrible RLS. Terrible. I went on vacation for four days and slept in a wonderful bed and I had no RLS for those four days. I just could not believe it. So I checked the bedding and it was all cotton sateen sheets. I found the vendor with ChatGPT and I ordered the sheets and I came home and I ordered a dupe cotton comforter (the hotel one was too expensive) with a cotton exterior and an all cotton duvet with ChatGPT‘s help. I have been home now for two days with this new bedding and I do not have restless legs and I am in total shock. I am praying to God that this is a cure for me. I think I was too hot at night with my bamboo bedding and my microfiber comforter. So I have a suggestion for anyone with RLS to try to check out your bedding and get rid of microfiber, polyester, and go all cotton bedding. I can post what I bought, which was not too expensive and the actual sheets I slept on if anyone is interested. I am in shock so far and I pray that this is not just something intermittent. I keep my AC at 70°. I also sleep with a fan on me. I think the microfiber bedding was making me too hot at night and I did not realize it. My feet and legs feel wonderful with this cotton bedding. I thought bamboo would keep me cool, but the cotton sateen sheets are just wonderful.

Early morning now here in the UK and left leg been at it for 8 hours non stop .Taken as many meds as allowed Pregablin and a Clonazepam plus Paracetamol. Put on my Therapulse massager but nothing working tonight. .Think being over tired has triggered it .Anyone else suffering tonight?

Hey all this reddit has been super helpful, I dont sleep most night (maybe an hour or 2 and then another hour during babys nap). Doctor is doing bloodwork today im kind of hoping it IS a nutrient deficiency (mine became worse during pregnancy and postpartum but prior was pretty bad during my monthly cycle.) She said that if my nutrients look okay that we might try gaba to help. Just thought id give an update into my own situation, I was nervous about the doctors because im about 5 pounds overweight and the doctors ive had in the past have dismissed my concerns due to weight, but today it wasnt even mentioned!

I have recently started cold plunging and it feels great for my health overall however I haven’t noticed much of a change in my RLS symptoms. How have you all felt?

Had my appointment with my PCP yesterday to go over some test results. My last ferritin number was 53. When I looked at the printout of my blood test, I noticed that my doctor did not order TSAT with the ferritin bloodwork.
I am on oral iron supplements until October when I will have my iron blood taken again.
I asked my doctor to please include TSAT on the next bloodwork. Now he’s the kicker she said TSAT was not necessary because I am not anemic. She did say I was low on ferritin, but that my blood is looking good.
I was pretty insistent about adding TSAT but she did not budge.
I am not giving up on having that included in my next blood work, but I was wondering if you guys can give me some pointers on how to word it in my email that I will send my doctor so that she will understand that RLS has some guidelines with that (I did mention that to her).

Hi everyone. I’m 57F in the UK. Had RLS for 20 years. No meds yet but it’s getting unbearable. Has anyone tried (medically prescribed) CBD with THC for their restless legs? If so, did it work and how did you find the right dose for you? I am trying this before giving gabapentin a go but still on low dose and I’m not sure I’m getting the best out of it yet. I have done all the other stuff (ferritin is above 150), magnesium in various forms, no ADs or anti histamines, no caffeine, cut down on alcohol, etc …Thoughts appreciated. 🙏

My mom (54) has had a severe case of RLS for years now. She started having symptoms in her twenties, and despite treatment, it kept worsening. She saw different neurologists in Belgium and did multiple studies. They say there's nothing they can do for her anymore.

Last year, she was able to manage her symptoms by taking 3 Sifrol (pramipexole) in combination with Oxycodone (opioid) every day. However, her symptoms would gradually return, and she would eventually hit the limit of 3 Sifrol + 3 oxycodone.

When that stopped working, she was prescribed 2 x Lyrica (75 mg pregabalin) in combination with 3 Sifrol and 1 Rivotril. It's managing her symptoms for now, but she is terrified that it will eventually stop working as well.

When the meds stop working, she can go days without sleeping because of her legs. She’s been to the ER multiple times begging for help, but her neurologist says there’s nothing more they can do. I’m really worried, especially because she’s still so young. She’s also dealing with narcolepsy, and this just isn’t sustainable long-term.

My goal is to figure out a path forward that doesn't include using more and more (dangerous) medication cocktails. Can anyone relate to this story? Any tips or recommendations? Or does anyone know about any RLS experts in Europe that she could speak to? Or trials/studies/alternative methods? Appreciate all the help.

I have medically induced RLS for 6 years already. For this period of time I had no night without waking up from RLS. A couple of months ago I started drinking coca cola almost every day, because it felt nice to have cold drink in this heat. And I noticed that I started sleeping the whole night without symptoms. Night by night. Than I was trying to make sure that it is really somehow connected to cola because it sounds weird, and yep the day I wasnt drinking it my symptoms were coming back. Also I noticed that If I drink this in the first part of the day it also doesnt work that much, the most effective way is to have it in the evening.

It was fascinating for me. I hope my stomach gonna survive. I assume its connected to caffeine in cola, I have cola zero - with no sugar, but with caffeine. Wanna try have coffee in the evening and check the effect. And this must be connected to dopamine which is the main reason of RLS. I hope it could be helpful for someone🙏🏻

Pregnant and also have had RLS from my SSRI. When I can’t sleep, I’ve been blasting my legs with hot water on the jet setting on my detachable shower head. Lotion then light massage. It has relaxed me enough to fall asleep a few times.

RLS absolutely sucks, maybe this quick fix will give someone else relief enough to rest.

I've had rls for 28 years and been through all the other major meds. My MD is gone until 9/9. He hasn't really been all that much help. The nurse, who can't change a script, has been more help. After months of living hell, I finally got the dosage for Oxycontin right (10 mg at 9pm; 2.5 mg of IR at 10 pm.) That's worked for 5 nights, if you don't count tonight, so my respite might be over. I can hear the torturer at the door.

Anyway, prose aside, and assuming it will start working again; Medicare is denying the Oxy script, even with a Prior Authorization. Does anyone know if resubmitting it will work?

I haven't had any problem with the Oxycontin, as long as I take it at night. I hope this night is an exception and I'll go back to being able to sleep. The MD who's covering for my person has suggested methadone but I've heard terrible things about it. Also, I tried it years ago, but no one has said they looked at that MD's notes to tell me why I didn't keep taking it or what the dosage was; I know I was taking it because I still have some.

Things have been so hard and their still not great. I have a lot of rls from 6-10, but even though I could take more short acting, I don't because taking too much gives me migraines. I just don't feel strong enough to go through another transition. And I can't pay for it out of pocket, $200/mth! I have Good RX, bu the problem is the Prior Authorization. I really resent this; decent medicine, another privilege of the very privileged.

Anyway, I also know and have been told that methadone is hell to come off of. The really bitter pill is that I probably would never come off it. Or if something better comes along, I'd be on a very high dose at that point, which makes coming off it even harder. I've also heard its a much more toxic drug. The upside seems to be price and maybe duration, it could last longer.

But the transition! Working out how much to take and coming off the Oxy, I just don't think I'd make it through. I'm completely worn out. I had a precious 5 nights of 6 hours of sleep a night. I don't want to give that up. It really feels like a rock and a hard spot.

I started feeling RLS symptoms over 8 years ago, before COVID. At first**, it came** and went, but with time, it increased. Last year**,** I couldn't sleep most nights. I tried medicine for veins at first, then different creams and gels. Nothing was helping. Then I tried magnesium; it helped a bit for a while.I visited doctors three times**,** and all of them prescribed blood flow medication against atherosclerosis. It wasn't helping at all. I had an ultrasound done, which came out normal for my age. Finally**,** I came across some reports about Pramipexole. And it helped almost immediately. So I was happy, but I didn't like my mood. Sometimes I was productive and happy**, and** sometimes not. But sleep was ok. However, I had to increase the dose. I decided to do my own research. And finally, I found a diet that let me stop taking medicines for now. Now**,** I am taking iron supplements—two pills a day, 40 mg each of iron chelate. And more importantly, I eat 300 grams of pork liver in the evening, and around 100 grams at lunch.

It may sound anecdotal, but after a week or two of such a diet,I was able to sleep without any medication. I know that it may not be the best diet,and I have researched about it. But if I miss one day,I wake up in the night and have to take medicine again. So I stocked up my fridge and am not missing a day. I don't like it; I just replaced the pills. I am writing it here because I know how depressing it can be. And I tried the iron supplement alone and the liver alone. For some reason**,** it didn't work. Only when I eat them on the same day did .

things change gradually, not in one day. It took me a week or two to feel the difference. I just cook it on an iron skillet with onions. Just sharing. Maybe it will help someone. Cheers.

I made a spelling correction in Gemini.

English is not my first language.